October 10, 2012

I am completely drained after today’s visit at the hospital, but in a good way. It was a long ride in this morning. It took us a little over 2 hours with traffic, but Mac fell asleep for a bit which was good. He is so tired lately. Our first appointment was with GI. We talked for a bit and they are changing his prescription from Pepcid to something I can’t pronounce and then we will go back next Wednesday for an ultrasound of his abdomen and scope to see if there is anything going on in there causing his daily vomiting. From there we went to our next appointment for his psych evaluation. We had a little trouble finding it and when someone asked me if I needed help I told them the floor and wing I was looking for. She said “That’s the psych ward” with a weird look on her face. I just said “That’s what we are looking for”.  Finally, we stumbled upon it. I have been seeing someone about my feelings about Mac’s diagnosis, but it was a whole different ballgame having Mac with me. I have to say I could not have been more impressed with this psychiatrist. We started talking about what Mac was like prior to diagnosis, and then the topic changed to school. I was explaining how he was in first grade when his tears started flowing. I explained how Mac was still struggling with the idea of repeating grade 1. Mac was able to tell him that he was sad about staying in first grade. Through a series of question he was able to get from Mac that is has nightmares that do not wake him up but scare him. Somehow, Mac ended up sitting on my lap crying and communicated that he is scared most of the time about something happening to him but was not able to yet share the specific fear. I have never felt so heartbroken, sitting with tears in my eyes, with my baby on my lap crying uncontrollably and hurting so much inside. I cannot say for sure what Mac is afraid of but I know my own fears. I guess up to this point I was living in la la land thinking because he was only 7 he would not think about the future or begin to worry if he even had one. His psychiatrist explained that just like we are going through the mourning process for the normal life we wanted for Mac, he too, is mourning the life he used to have. I guess up until recently I have been so focused on his physical needs that I did not think about the complexity of emotions he is struggling with. I have read the poem “What Cancer Cannot Do” a hundred times. Cancer has broken my heart, made me feel sadness and fear to my core, but it has also shown me just what an incredible gift my children have been to me and allowed me to see the beauty in the everyday mundane things in life I used to take for granted. The sight of seeing my boys sitting on the floor playing a game and laughing, talking and even arguing a bit has become one of the most beautiful sights in our home. I am thankful for every moment we have together, it is such a shame in life how it usually takes such a tragedy for us to realize and really see the beauty in our lives.

October 4, 2012

It has been a while since our last update.  I’m not really sure even where to begin. Physically Mac is doing great. Although his Dr. has some concern he may be developing an ulcer so we will have that checked out next week. Emotionally, we all seem to be on the edge of full blown nervous breakdowns.

Liam was devastated when hearing of the loss of the little girl who had been on the news and met Justin Bieber. He has cried several times over various things that seem to get blown out of proportion and because of his heightened sensitivity hurt his feelings.

 Mac seems to be falling into a depression. I started to notice a difference in him when school started, but it has gotten progressively worse. He has been able to share with me that when he cries it is because he is sad, but does not know what is making him sad.

 I feel like every time we have a few great days and I start to feel like I really got this “new normal” life down, something happens. This new life will never compare to our old life, but we are all still home and together so what is there to complain about, right? That is when I fall apart. That is when something will happen like the doctor suggesting a psych evaluation because clearly Mac is struggling with everything, and who wouldn’t be? That is when I feel so helpless. I just don’t understand why all of this happens to children, why they are made to suffer so much, and why parents have to sit back and watch their children hurt physically and emotionally. It is just so unnatural. I hate that I cannot help him. I hate that I am always one wrong word away from tears. I hate that my children are so sad a lot of the time. Most of all, I hate that I never realized how absolutely perfect our lives where and how I took for granted the joy of having 2 healthy children.  I have learned to let go of planning and have started to try to live in the moment. I will never stop praying for a miracle nor give up on my faith. I just wish I could find some way to get past the sadness and guilt for not being able to give my children the childhood they deserve. 

A Day of Yellow and Gold to Support Childhood Cancer

I would like to share with you campaign that has begun on Facebook. As I’m sure you all know by now September is Childhood Cancer Awareness Month. A page has been started on Facebook entitled “A Day of Yellow and Gold to Support Childhood Cancer”. I have listed the information below. I ask that you please spread the word and consider showing your support for all Children who are fighting, have fought, or may fight this horrific disease in the future.

About

On September 28th please wear yellow or gold clothing to raise awareness for those children who are currently fighting cancer and for those children who battled so valiantly. They deserve all the attention we can possibly bring to finding a cure!

Description

I created this page, "A Day of Yellow and Gold to Fight Childhood Cancer" in order to bring attention to the need for much greater awareness and funding to eradicate all forms of childhood cancer. I don't want to bombard you with statistics but simply state that not enough is being done by our government, pharmaceutical companies, and institutions such as the American Cancer Society to put an end 

to the suffering of children who face the horror of cancer. If enough of us can do something as simple as wearing yellow and gold on the same day (September 28th) I believe that this could get the ball rolling towards creating enough media attention. This could put pressure on those institutions I mentioned above to do more to help our children. I dream of the day when Major League sports teams choose a day and wear yellow and gold to help raise awareness for childhood cancer as they do for breast cancer awareness by wearing pink. I dream of the day when the American Cancer Society gives a much more equitable amount of research funds to childhood cancer, as of now they only allocate one cent of every donated dollar to our children. I dream of the day when no other mothers, fathers, sisters and brothers have to feel the searing pain of losing a son, daughter, or sibling to the monster that is childhood cancer. Please share this page with your friends throughout the world; our little Heroes’ and Angels deserve all the attention we can possibly bring to fighting Childhood Cancer. There is strength in numbers and if the numbers are great enough they will not be ignored!
"Smile, Be Happy"
Tony Stoddard

September 16, 2012

I’m not really sure where to start this post because I am happy to say we don’t have much going on. We are starting to fall into regular routines with the start of school. I am having a hard time finding ways to keep my mind off things while the boys are at school. There is plenty of housework to do but can’t seem to motivate myself to do it. I am really enjoying out time together after school though. I LOVE that I can now sit down with Liam every afternoon and really do his homework with him. Previously, I would be busy doing schoolwork and would check it over quickly. We actually sit together, just the two of us, and talk about his day and what he is working on. I never realized how much I was missing that one on one time with him. I also have been thinking a lot about how much our life has changed and although there are many times I feel I will be completely engulfed in my pain and sadness over the loss of the childhoods both my kids are missing, just those few minutes a day with Liam seem to rejuvenate me. I am so thankful and blessed that I have him in my life. He has a way of teaching me about gratitude without even knowing it.

Mac is really adjusting well to school. He seems to be finding it easier and easier to go in the mornings.  I am shocked at his stamina and energy. After all he has been through I thought he would have a harder time getting through the school days. We are going into Boston this Wednesday to change out his g-tube button. The one he has now has started to leak a bit and is getting gross. I am hoping it will be a quick trip since we do not need to go to clinic for a couple weeks!

It’s hard for me to say how I am doing. It all depends on what moment of the day you are asking. Every day I go through a roller coaster of emotions. I get so sad at times when Mac struggles to do things that used to come so easy to him or I can see on his face how badly he wants to eat one of his favorite foods that taste just awful to him now. I am so happy at other times when I think back to all that he has been through and the awe inspiring courage he has shown. I am grateful I was chosen to be the mom of two boys that have taught me more about life then I could have ever dreamed to teach them. But mostly I am scared. Scared for what tomorrow might look like for our family, scared for what may or may not happen. I wish I was one of those people who lived in the moment with no thought to the future. I think this is the only way to truly enjoy and be grateful for each new day that we have together and at home. This is my new mission, to try to look at my children and see not two kids who have been robbed of the innocence and naivety that is childhood, but to see the two people in the world who have knowledge beyond their years and the ability to make my day or break my heart with just one little look.  Mac carries the physical scars of cancer while Liam carries the emotional ones. I will never understand why our family was chosen for this journey, but when I look at them and hear their laughter it gives me the hope that we can come through it.

September 6, 2012

Well, we could not be happier with the MRI results from yesterday. I find myself looking back over his original MRI and seeing how far he has come. The fact that the tumor is continueing to get smaller is a miracle for our family. We cannot say enough about the people at the Floating Hospital. With the start of Childhood Cancer Awareness Month I find myself reflecting on our journey. It is funny how there are certain parts of our journey that I will never forget. I remember the ER doctor coming in while Mac was still sedated and sleeping, shutting off the tv, closing the door and saying “These are words I never want to have to say to parents. Your son has a very large tumor on his brain.” While saying this he put his hand on my shoulder to steady me and in a way offer his support.  I remember the very first nurse in the PICU giving us a tour of the unit and letting us know what to expect overnight.  She then turned to me and said “I know he is your son, but while he is here he is ours too.” I will never forget the feeling that came over me when the doctor sat down to give us the results of the pathology report. With tears flowing down her face she turned to us and said “Mac has a grade IV Astrocytoma. I’m sorry. The prognosis is not good.” When they say at the Floating Hospital they treat every child like their own it is absolutely true. In a way, January seems so long ago and so much has changed, but at the same time it seems like just yesterday. I know we have just started on this journey and that the road ahead will be paved with ups and downs, but for today we are celebrating this up and thanking God for all the people we have met and gotten closer with throughout this journey. 

September Slideshow

Please take a few minutes to watch this slideshow of pictures. It is our journey with Mac through Childhood Cancer from January through today.


http://youtu.be/Llq1dR8f4ME

September is Childhood Cancer Awareness Month

Today is the start of Childhood Cancer Awareness Month. I feel like I have been posting so much about it on Facebook, but am not sure what it means to most people. I can tell you what it meant to me last year. The start of September meant the start of a new school year for the boys and for me. It meant the start of numerous Fantasy Football drafts for Billy and the beginning of my favorite season. I read a little about childhood cancer and donated to St. Jude’s. I thought about childhood cancer as a tragic and horrific thing that happened to other people. Never in my worst nightmare did I think it would touch my family.

Since last September so much has changed for us. I have met countless heroic children battling this disease with a grace, dignity, and courage that is unmatched. I have met their siblings who have grown up far too soon and seen far too much pain and suffering within their families. Childhood Cancer has a whole new meaning to me now!

Today, Childhood Cancer means to me living in fear every day that Mac will get a fever or worse. It means that Liam worries every day that his brother is going to die. It means that we cannot plan a family vacation for next year or even next week because our life is a constant unknown. I am now a full time caregiver for Mac instead of a teacher. There is a constant feeling of stress in our house because we are always watching the clock making sure his meds are given at the right time and his g-tube feeds are started. We have all given up the ability to go anywhere without timing it with the meds and feeds. Mac has lost his childhood. Liam has lost the brother he once knew. We have all sacrificed the life we once took for granted for this one in the world of Childhood Cancer. Our lives and family has been torn apart. We continue to pray and hope that one day we will be able to put it back together but we will never be the same.

This September please take the time to think about the lack of funding for research and resources for these amazing children. If there is one thing I am sure of it is that Mac deserves better, Liam deserves better and all children deserve better. They deserve a chance at life.